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Translation and cross-cultural adaptation of the 39-item Parkinson's Disease Questionnaire (PDQ-39) to the Italian culture was performed by Oxford University Innovation in 2008, but this version has never been validated. Therefore, we performed the process of validation of the Italian version of the PDQ-39 (PDQ-39-IT) following the "Consensus-Based Standards for the Selection of Health Status Measurement Instruments" checklist. The translated PDQ-39-IT was tested with 104 patients diagnosed with Parkinson's disease (PD) who were recruited between June and October 2017. The mean age of the participants was 65.7 ± 10.2 years, and the mean duration of symptoms was 7.4 ± 5.3 years. The internal consistency of the PDQ-39-IT was assessed by Cronbach's alpha and ranged from 0.69 to 0.92. In an assessment of test-retest reliability in 35 of the 104 patients, the infraclass correlation coefficient (ICC) ranged from 0.85 to 0.96 for the various subitems of the PDQ-39-IT (all p < 0.01). Spearman's rank correlation coefficient for the validity of the PDQ-39-IT and the Italian version of the 36-Item Short Form (SF-36) was - 0.50 (p < 0.01). The results show that the PDQ-39-IT is a reliable and valid tool to assess the impact of PD on functioning and well-being. Thus, the PDQ-39-IT can be used in clinical and research practice to assess this construct and to evaluate the overall effect of different treatments in Italian PD patients. [ABSTRACT FROM AUTHOR]

Background Subthalamic nucleus (STN) deep brain stimulation (DBS) improves quality of life (QoL), motor, and non-motor symptoms (NMS) in advanced Parkinson's disease (PD). However, considerable inter-individual variability has been observed for QoL outcome. Hypothesis We hypothesized that demographic and preoperative NMS characteristics can predict postoperative QoL outcome. Methods In this ongoing, prospective, multicenter study (Cologne, Manchester, London) including 88 patients, we collected the following scales preoperatively and on follow-up 6 months postoperatively: PDQuestionnaire-8 (PDQ-8), NMSScale (NMSS), NMSQuestionnaire (NMSQ), Scales for Outcomes in PD (SCOPA)-motor examination, -complications, and –activities of daily living, levodopa equivalent daily dose. We dichotomized patients into “QoL responders”/“non-responders” and screened for factors associated with QoL improvement with (1) Spearman-correlations between baseline test scores and QoL improvement, (2) step-wise linear regressions with baseline test scores as independent and QoL improvement as dependent variables, (3) logistic regressions using aforementioned “responders/non-responders” as dependent variable. Results All outcomes improved significantly on follow-up. However, approximately 44% of patients were categorized as “QoL non-responders”. Spearman-correlations, linear and logistic regression analyses were significant for NMSS and NMSQ but not for SCOPA-motor examination. Post-hoc, we identified specific NMS (flat moods, difficulties experiencing pleasure, pain, bladder voiding) as significant contributors to QoL outcome. Conclusions Our results provide evidence that QoL improvement after STN-DBS depends on preoperative NMS characteristics. These findings are important in the advising and selection of individuals for DBS therapy. Future studies investigating motor and non-motor PD clusters may enable stratifying QoL outcomes and help predict patients' individual prospects of benefiting from DBS. [ABSTRACT FROM AUTHOR]

Background: The purpose of this study was to determine the extent to which summary index scores from the short form Parkinson's Disease Questionnaire (PDQ-8) replicate those from the parent form (PDQ-39) in a longitudinal study.Methods: Longitudinal data gained from the PD-MED trial were examined (n = 1867), to determine the extent the PDQ-8 replicates results from the PDQ-39 at baseline and follow up. The sensitivity to change of the PDQ-8 was also compared with that of the PDQ-39. Finally, results on the two measures were compared with those from the Hoehn and Yahr (HY) clinical staging scale.Results: Results of the Single Index summary score gained from the PDQ-8 were found to closely replicate those gained from the PDQ-39 at each of the three time points. Furthermore at each time point the intraclass correlation coefficient between the two measures was very high (ICC range 0.93-0.96). Similarly, the two measures gave very similar accounts of change (e.g. from baseline to follow up at one year effect sizes were 0.18 for the single index calculated using the PDQ-39, and 0.09 when calculated using the PDQ-8). Similar levels of correlation were found between the two indices when correlated with the HY scale.Conclusions: The PDQ-8 closely replicates results gained from the PDQ-39 when calculating single indices. In instances where a single summary score of the impact of PD on self-reported quality of life is needed, it is likely the PDQ-8 will provide reliable and accurate information. [ABSTRACT FROM AUTHOR]

Background The 39-item Parkinson's Disease Questionnaire (PDQ-39) is the most thoroughly validated and extensively used self-report measure for the assessment of health-related quality of life in people with Parkinson's (PwP). Given the extent of its use and increasing emphasis on electronic data capture, an e-based version of the PDQ-39, the ePDQ, has recently been developed. The aim of this short report is to present some key reliability and validity data that confirm the psychometric quality of the ePDQ. Findings Participants were emailed a unique link to an online survey incorporating the ePDQ and demographic questions. A total of 118 PwP fully completed the survey. Floor and ceiling effects were calculated to ensure responses were not biased to extreme values. Consequently, score reliability was assessed by item-total correlations with a range from 0.34 to 0.90. Cronbach's alpha was calculated at between 0.64 and 0.95 for the eight domains of the ePDQ. Construct validity was assessed by comparing domain scores in relation to disease duration and gender, with hypothesised differences being largely confirmed. Construct validity was further assessed following a higher order factor analysis which confirmed the appropriateness of calculating a summary index score. Subsequently, significant, but moderate correlations were calculated between the ePDQ summary index score and disease duration and age at diagnosis. Conclusions Results indicate that the ePDQ largely mirrors the properties of its parent instrument, the PDQ-39, in terms of reliability and validity. Potential users can therefore incorporate the ePDQ into computer-based data capture systems with confidence. [ABSTRACT FROM AUTHOR]

Background: The PDQ-39 is the most thoroughly validated and widely used self-report instrument for the assessment of health-related quality of life in people with Parkinson's (PwP). Given the breadth of its use and increasing emphasis on electronic data capture, there may be significant benefit in validating an electronic version of the PDQ-39. Objective: Firstly, to migrate the paper-based version of the PDQ-39 to a computer based platform and assess its usability and acceptability to respondents. Secondly, to investigate the impact of implementing non-response options on response rates and data completeness. Methods: Six PwP participated in cognitive interviews in order to assess the usability and acceptability of the electronic version of the PDQ-39, the ePDQ. This was followed by an online survey of 129 PwP, randomly assigned to one of two groups; one required to provide a response to every item and one with the option to skip any item they did not wish to answer. Results: Cognitive interviews indicated that the ePDQ is acceptable to PwP, with positive feedback regarding layout, features and functionality. 125 PwP fully completed the ePDQ. Following randomization 60 participants completed the forced response ePDQ and 65 completed the non-forced version. Response rates of 98.4% were achieved for the forced response ePDQ and 95.6% for the non-forced. Missing value analyses calculated levels of missing data at below 5% in the non-forced sample. Conclusions: The ePDQ is user-friendly and acceptable to respondents. Additionally, there appears little difference when implementing non-response options on response rates and data completeness. [ABSTRACT FROM AUTHOR]

Abstract: Background: The impact of Parkinson''s disease (PD) on the quality of life of both patients and their carers has not been well documented. Objective: This study describes the health status of both PD patients and caregivers as measured on a generic measure of health status (SF-12), and then explores to what extent patient self-reported health, as measured on the disease-specific Parkinson''s Disease Questionnaire (PDQ-39), is associated with carer strain and self-reported quality of life. Methods: A postal survey was carried out of both patients and caregivers through local branches of Parkinson''s UK. Questionnaire packs were sent to those on the database with a diagnosis of PD. The patient was asked to give the carer questionnaire to their main caregiver, if they had one. Results: Results from the SF-12 suggests that PD has substantial adverse effects on both the physical and mental well-being of patients when compared with population norms. While carer physical health was not found to be substantially different from that of the general population, emotional health was lower than that of the general population. Furthermore, results suggest that the self-reported health status of PD patients is associated with higher levels of caregiver strain and poorer emotional health. Conclusion: PD impacts on both the well being of both patients and caregivers; the data provide evidence that the health status of the patient, in particular their physical health, has a significant impact on the well-being of their caregiver. [Copyright &y& Elsevier]

Abstract: Objective: The purpose of this study was to evaluate the psychometric properties of a short form health survey, the Parkinson''s Disease Questionnaire (PDQ-8), cross-culturally, by comparing results gained from this instrument to the original longer form instrument—the PDQ-39. Design: Data are from the Global Parkinson''s Disease Survey. Outcomes: The 8-item Parkinson''s Disease Questionnaire Single Index Score (PDQ-8-SI). In this study, we evaluate response rate, scaling assumptions, and data quality, in terms of comparability of results with the parent form from which the PDQ-8 was derived, of the instrument in the USA, Canada, Spain, Italy and Japan. Results: The PDQ-8 was found to produce results that were very similar to the parent form across all five countries. However, it should be borne in mind that the PDQ-8 was nested within the PDQ-39, and results may be influenced by this. Conclusions: Results suggest that the PDQ-8 is a valid and reliable measure that can be appropriately and meaningfully used in cross-cultural studies. [Copyright &y& Elsevier]

Background: the Parkinson's Disease Questionnaire (PDQ-39) is the most widely used Parkinson's specific measure of health status. It is increasingly used in treatment trials, sometimes as a primary end-point, where any missing data can potentially cause difficulties in analyses. Objectives: the purpose of this article is to evaluate the Expectation Maximisation (EM) algorithm for the imputation of missing dimension scores on the 39-item PDQ-39. Methods: a postal survey of patients diagnosed with Parkinson's disease (PD). A total of 1,372 patients were surveyed and 839 (61.15%) questionnaires returned completed or partially completed. Of these, complete PDQ data were available in 715 (85.22%) cases. Data were deleted from this complete dataset and a sub-set of 200 respondents from this dataset and then imputed using the EM algorithm; results were then compared to the dataset before data deletion. Results: results gained from imputation of data closely mirrored that of the complete dataset in each case. Descriptive statistics, mean scores and spread of scores were almost identical between original and imputed datasets. Furthermore, original and imputed datasets were highly correlated [intra-class correlation coefficient (ICC) = 0.93 or greater], and mean differences were small (+1.00). Conclusions: the results suggest that the use of EM for the PDQ-39 provides data that closely mirrors the original when this has been deliberately removed. Consequently, EM is likely to be appropriate for trials using the PDQ that contains missing data points. [ABSTRACT FROM AUTHOR]

Abstract: Parkinson''s disease (PD) is a common neurological disorder. Recently, bilateral deep brain stimulation (DBS) of the subthalamic nucleus (STN) has become an option in the treatment of severe PD. We measured the health-related quality of life (HRQoL) of 27 parkinsonian patients, who underwent a bilateral STN-operation. The instruments used for the evaluation of the HRQoL were the Parkinson''s Disease Questionnaire (PDQ-39) and the Finnish version of the Nottingham Health Profile (NHP). We found that the quality of life significantly improved when measured with both HRQoL scales. Clinical improvement and improvement in HRQoL were positively correlated. [Copyright &y& Elsevier]

: Background and objectivesHealth status measures, used to measure the subjective functioning and well-being of respondents, are increasingly being used in trials of treatments that are undertaken in a variety of countries. To assess comparability of results gained from such cross-cultural studies, it is important for researchers to know the comparability of instruments across cultures. One measure widely used in cross-cultural studies is the Parkinson''s Disease Questionnaire (PDQ-39). We evaluated response rate, data quality, score reliability, and scaling assumptions of the instrument in the United States, Canada, Spain, Italy, and Japan.: MethodsOur data were gained from the Global Parkinson''s Disease Survey, a cross-national survey, in which the PDQ-39 was interviewer administered to respondents.: ResultsOur data suggest that the PDQ-39 is, for the most part, a valid and reliable measure that can be appropriately and meaningfully used in cross-cultural studies. However, one of the dimensions of the measure, Social Support, may not be sufficiently reliable to be used as a primary endpoint in trials.: ConclusionThe PDQ-39 seems to be sufficiently robust to be used in trials and surveys in cross-cultural studies. [Copyright &y& Elsevier]

The Parkinson's disease questionnaire (PDQ-39) is a well-validated British scale for the assessment of health-related quality of life (HQoL) in Parkinson's disease (PD). The PDQ-39 has been translated into Greek and it was applied to 119 Greek PD patients. These patients were classified in stages according to the Hoehn and Yahr (HY) scale and their motor disability was assessed by means of the Unified Parkinson's disease rating scale (UPDRS) as well as the Schwab and England activities of daily living scale (ADL). The Beck depression inventory (BDI) was applied for the evaluation of depression. The translated version of PDQ-39, designated PDQ-39GrV, was validated as follows: (1) Cronbach's alpha coefficient and item-total Spearman's rank-order correlations were calculated in order to estimate the internal consistency of PDQ-39GrV scales. (2) Validity of the PDQ-39GrV was examined in terms of agreement with the clinical assessment parameters (stage, UPDRS. ADL and BDI scores). (3) Sixty one PD patients were re-evaluated 3-7 days later in order to check test-retest reliability. The results showed the following: (1) The PDQ-39GrV demonstrated very good internal consistency (alpha 0.71-0.94). Item-total correlations were statistically significant (r: 0.52-0.93). Test-retest measurements correlated significantly (p = 0.001). (2) Clinically obtained motor parameters correlated well with PDQ-39GrV scales influenced by physical aspects of the disease, while emotionally and socially influenced ones correlated with depression. Our findings indicate that PDQ-39 GrV is a reliable, easy to administer scale for the assessment of HQoL in Greek PD patients. [ABSTRACT FROM AUTHOR]

Objective: The optimal timing of subthalamic nucleus (STN) deep brain stimulation (DBS) in Parkinson's disease (PD) is a topic of ongoing debate. In patients with short disease duration an improvement of quality of life (QoL) has been demonstrated for patients aged younger than 61 years. However, this has not been systematically investigated in older patients yet. We hypothesized that patients aged 61 years or older experience a significant QoL improvement after STN-DBS with no difference in effect sizes for groups of patients with short and longer disease duration., Materials and Methods: From four centers (Cologne, London, Manchester, Venice) we identified "older patients" aged 61 years or older with short (≤8 years) or longer disease duration and compared QoL, motor impairment, complications, medication requirements, and Mini-Mental State Examination (MMSE) on baseline and five months after surgery., Results: Mean age/disease duration in 21 subjects with shorter disease duration were 65.5/6.3 years compared to 66.8/14.6 in 33 subjects with longer disease duration. The short disease duration group was affected by less baseline motor complications (p = 0.002). QoL in the short/longer disease duration group improved by 35/20% (p = 0.010/p = 0.006), motor complications by 40/44% (p = 0.018/p < 0.001), and medication requirements by 51/49% (both p < 0.001). MMSE remained unchanged in both groups., Conclusion: Patients aged 61 years or older benefited from STN-DBS regardless of short (≤8 years) or longer (>8 years) disease duration. Our results contribute to the debate about DBS selection criteria and timing and call for prospective confirmation in a larger cohort., (© 2017 International Neuromodulation Society.)